Patient characteristics
| First online survey | Interviews | 1000minds survey | |
|---|---|---|---|
| Total no. of participants, n | 21 | 9 | 14 |
| Type of participant, n (%) | |||
| Patients | 12 (57) | 3 (33) | 8 (57) |
| Parents | 9 (43) | 6 (67) | 6 (43) |
| Age, median in years (range) | 28 (2–74) | 15 (6–68) | 29 (6–74) |
| Disease, n (%) | |||
| MKD | 6 (29) | 1 (11) | 3 (21) |
| TRAPS | 5 (24) | 3 (33) | 3 (21) |
| CAPS | 9 (43) | 4 (44) | 6 (43) |
| FMF | 1 (5) | 1 (11) | 2 (14) |
| Country of residence, n (%) | |||
| Australia | 2 (10) | 7 (78) | 1 (7) |
| Canada | 1 (5) | 2 (22) | 0 (0) |
| Switzerland | 1 (5) | 0 (0) | 0 (0) |
| Netherlands | 2 (10) | 0 (0) | 2 (14) |
| USA | 15 (71) | 0 (0) | 10 (71) |
| UK | 0 (0) | 0 (0) | 1 (7) |
CAPS, cryopyrin-associated periodic syndromes; FMF, familial Mediterranean fever; MKD, mevalonate kinase deficiency; TRAPS, tumour necrosis factor receptor-associated periodic fever syndrome.